To BE or to NOT BE: Contestations and Realizations
By Srilatha Juvva and Candice Menezes
A person living with a disability is typically seen as ‘disabled’ first, disregarding his/her innate values and qualities of being human. The identification with the impairment is attributed more significance in comparison to the array of identities that s/he possesses. Identities are often mediated and transacted in spaces that are socially constructed and interpreted. Spaces such as culture are ridden with stereotypes and assumptions, and are seen to be natural formations, without any human agency involved in altering it. In the process of ‘relinquishing agency’, we resort to helplessness and this is reinforced by structures that take advantage of ‘othering’ people.
The question of agency can be addressed by examining the difference between religion and spirituality, which are both embedded in the cultural context in which people live. While on the one hand, culture is supposed to ‘take care and protect’ people through use of social controls, it is in this very same culture that discrimination and oppression are unashamedly practiced and propagated through the ‘othering’ of people with disabilities. Culture is the seat for organized religion and this sets the tone for crystallization of pedantic beliefs and practices. Religion is an institutionalized way of organizing spiritual and cultural beliefs, rituals, norms and practices (Canda, 1997; Hodge, 2001).
Spirituality, on the other hand, is a phenomenon experienced at the individual, subjective, and personal level. Pulla (2014) opines that spirituality ‘encompasses everything that we cannot see directly with our eyes, nor directly perceive by the other senses and may not know by our mere reasoning’ (p. 186). Canda (2013) viewed spirituality in a holistic sense, as ‘totality of the person-in-relation that cannot be reduced to any name, role, or function’. The ability of an individual to transcend human boundaries and make connections with one’s inner self or the cosmic power is an inherent part of spirituality (Juvva, 2012). When an individual is able to surmount divisive boundaries, and access one’s inner self or the cosmic power, s/he connects with others’ inner selves, which denotes the interdependent aspect of being and functioning, which is an inherent part of spirituality. Spirituality is a transformational process, providing for integration and connectedness to self, others, nature and the ‘Higher Power’ (Furman et al., 2005: 819). While religion exists at the social and normative level, spirituality exists at the personal and subjective/interpretive level. Culture embeds the two as co-existing and often ambiguous. Thus while spirituality exhorts inclusion, cultural norms and religious practice/s tend to exclude, marginalize and ‘other’.
Culture is a component of a society in which spirituality is closely intertwined. Religion is an organized form of collective practices vis-à-vis the individual aspect, which is integral to spirituality. The antithetical perspective described above is often allowed to pass by in the name of pedantic norms that are not only adhered to but also proselytized. When a person with disability is ‘othered’, s/he is automatically relegated to the margins; and this can be spirit-breaking (Juvva, 2012). Jane Hurst (2007) posited that disability is seen as god’s judgment and will, which assumes that the person must have done something wrong to ‘merit’ a disability. This is translated in action in the form of persons with disability being excluded from the community, where, according to Nancy Lane (1999) there is a tendency to “judge, dismiss, and disempower us, usually shutting us out of the religious community”. Typically, this is seen in the attributions given to persons with disability in some religious scriptures as those with a devious, cunning, and evil mind, who are crafty and wicked in their actions and plotting harm to others (as is depicted in mythological tales, such as Mahabharata). This type of ‘othering’ as evil and not-to-be-trusted has a detrimental impact on the self-concept of the person with disability and leads to further exclusion by others and the self.
Religious scriptures exhort us to experience spiritual processes in the pursuit of the meaning of one’s existence and purpose. Hurst (2007) opines that viewing ‘disability as the unfolding of God’s plans’ enables a person gain ‘greater faith and the experience of love in the world’ (p.187). In such a situation, impairment is perceived as a chance to strengthen an individual’s faith and relationship with God. She proposed that experiences of disability typically foster empathy and compassion in which we ‘experience the pain and joy of others from the depth of our own hearts’ (p. 188). In doing so, we are made aware of our boundless inner power to counter the fear and limitations that arise due to disability. For example, when a person with disability is able to derive existential meaning in her life, she transcends barriers as a salutary process, and this enables her to reinforce this for herself and for others. To illustrate, Sheela (name changed), who has mental illness, used her connectedness with self to manage her hallucinations and deflect them every time they came in the way using simple techniques of thought and replacing hallucinations with inner power. In doing so, she was able to inspire other members of the Day Care Centre to practice the same through supervised sessions at a designated hour.
This process of ‘unleashing and energizing the soul to love and embrace oneself and the other, ultimately contributes to enhanced compassion, love, expansion and connection for the self and the other’ (Juvva, 2012). To illustrate, Roshan (name changed to protect identity) found that when he became aware of every breath he inhaled and exhaled, his anxiety and sadness would dissipate gradually filling him with a sense of purpose and inner strength to carry out his tasks for the day, while he lived with chronic anxiety and depression every day of his life for the past thirteen years. The ability to access one’s expanding power is strengthened when people are given an opportunity to use one’s agency to disrupt discrimination and stigma, creating the potential to deal with disabling barriers and challenge them. For example, Rianna, now 25 years, has been living with cerebral palsy for most of her life. However, this has not stopped her from seeking quality education and excelling at every task she undertakes. Rianna states every time she feels bogged down and questioned, she allows herself to get in touch with her inner self, the strong ‘unadulterated’ being by singing hymns. Rianna feels this ignites within her a blazing fire to conquer all odds and triumph over barriers.
Often initial spiritual practice is best accomplished through groups. Accessing and gaining membership to spiritual groups in order to fulfill the rights of persons with disability to inclusive services and ‘expanding the circle of humanity’ can be explored and encouraged (Hurst, 2007: 191). The community belongingness can be harnessed to leverage discriminatory attitudes that are restrictive, even though they are rooted in culture. When there is a collective power, it allows for successful partnerships and negotiations in the environment. The family is one such collective power that can foster a deep spiritual foundation, thus strengthening the inner potential and resolve of an individual, especially one with a disability to own their ‘greatness’, which includes strengths, competencies, and abilities and become agents of change. This resource is yet to be fully tapped.
Viewing disability and impairment in this context of an ambiguous cultural, religious and spiritual expression reveals the intriguing yet confusing ways in which the same culture espouses and encompasses extreme viewpoints to segregate and discriminate. Thus while spiritual and religious connotations are expected to embrace and embody universal values where inclusion is prioritized and cherished, in practice they tend to marginalize and exclude. While we do exist in a world of dualisms where conflicting and converse perspectives coexist, it behooves an examination of the extent to which the conflict divides, excludes, and breaks the spirit of people who are ‘othered’. This has implications for discrimination and acceptance not only at the societal level but at the individual level as well, in terms of an individual’s acceptance of oneself.
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Pulla, V. (2014). Spiritually Sensitive Social Work: The Road Worth Taking. In B.R. Nikku, and Z. H. Hatta (Ed) Social Work Education and Practice: Scholarships and Innovations in Asia Pacific. (pp 182 – 200). Brisbane: The Primrose Hall Publishing Group.
Srilatha Juvva is a social work educator and works with the Centre for Disability Studies and Action, School of Social Work, Tata Institute of Social Sciences as Professor. She has experience in research and capacity building in the sectors of training in disability and mental health
Candice Menezes is trained in Psychiatric Social Work (NIMHANS) and Social Work in Disability Studies and Action (TISS). She has four years of experience as a researcher and trainer in the fields of disability and mental health. She was also a teacher assistant with the Dept. of Inter-religious Studies, St. Xavier’s College, Mumbai, and is trained in massage therapy at Care to Touch, San Francisco, CA.
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